Day +45 I Think…

Day 45 already! It’s amazing how time flies. In the hospital it was so slow. Now that I’m home it seems to go quicker. Anyways, things haven’t been so great. I do not have GVHD (graft versus host disease) yet.

I have for the past 3 weeks been suffering from lumps in my neck pushing on a nerve. The nerve pain starts in the neck and goes over my head and into the side of my nose. It is so painful and barely anything touches the pain. I basically lay in bed all day with an ice pack. Which is what I’m doing as I write. Unfortunately they don’t know what’s going on there. I’m getting a ct scan done next week. If it’s muscle related you would think it would ease up . Oh well. I know if I didn’t have the headache I would be able to do a bit more.

As for nausea, I still get it but it’s not so bad anymore. I have my taste buds coming back and the steroids I’m on make me hungry. Usually it’s more like morning sickness and I often throw up but I’m getting pretty used to it.

So other than that , things are moving along nicely. Doctors seem happy.

I did manage to cheer on all 4 Kids this week. I watched senior boys soccer on Monday, grade 8 girls volleyball on Tuesday and Dylan and Brandon ran a cross country race on Wednesday. It felt great to get out and cheer them on. I saw friends I hadn’t seen since before transplant. I got lots of wonderful hugs.

I’m supposed to stay away from crowds so I have done very little. I watch church at home and I love that I can. Livestream is great. The boys are coughing right now too so they have to keep away from me. It’s really hard though. I just want to hug them all the time.

We are still getting meals 3 days a week. Thank you everyone who feeds us. It takes a lot of stress away. I am hoping soon I rebuild my strength. I long to feel normal.

I want to craft and cook and bake and eat sushi with my friends. But I can’t. Hopefully by day 100 I will be ok. And I am not complaining because I am alive right now and so thankful God has brought me this far.

I have new worries though. When you find out you have cancer, you’re scared your going to die. Chemo fixes it and transplant happens and your scared your not going to make it through the barbaric treatment of the chemo before transplant. I got through it though. Now my worry is waiting to find out if I’m cancer free. Day 100. Then I start to think well if I’m cancer free and all donor cells, what if I relapse. It happens a lot. I know I shouldn’t worry about anything and I really try not to but it’s in the back of my mind. I pray and try to leave it with the Lord. I know no matter what we will get through it.

Please continue to pray for me to have healing. We appreciate it so much and are grateful to everyone for the support.

Check out the beautiful weather . Sure brightens up my day.

Day +34

Time for an update.

It’s been almost 2 weeks since I’ve been home. Which is crazy considering how long a 1 month hospital stay feels like. We are adjusting well at home. I watch my husband with a new set of eyes managing everything. He is just being the absolute best caregiver. The kids are busy with school and sports. I go 3 days a week to the hospital.

As far as how I’ve been feeling, things are getting better. The nausea seems to be lifting and I have been eating much better. My meal of choice right now is a chocolate milkshake. You gotta get those calories in somehow . 😝 Up until Sunday I was pretty sick but I’m getting through it no problem. I just take one day at a time.

I have enjoyed visiting with family and friends. I’ve been missing everyone. This week I have lots of visitors. It’s good to catch up. I made it out to a volleyball game to watch Madison. I did ask for permission and got the ok. It was really nice to watch her.

I was going to try to get to a soccer game this past weekend but it didn’t work out. I’m very shaky and I get lightheaded easily so best to stick around the home.

On Sunday we celebrated Dylan’s birthday. He’s now 12 years old. This years birthday was different for him but I think he still loved it. We had cake with family and celebrated 2 other birthdays as well.

So that’s kinda the last 2 weeks in a nutshell.

😀

Tania

Reality…

Yesterday was back to reality for me. After a bit of a setback I finally made it home. It’s such a comfort to be home with my family. The reality, I am not in great shape so my expectations need to be lowered. I did know this would happen and it would be how it needs to be for awhile. I’m sure frustration will hit occasionally but I’ve made it this far.

The treatment I received was nothing short of harsh. The days vomiting every 5 minutes. The fevers, the weakness and fatigue. The nausea that doesn’t go away and how everything I eat tastes bad. Like acid or metal. Not to mention the mucositis ( sores in mouth and throat ). Being fed through my line because I couldn’t eat. Morphine pump for pain. The horrible hospital bed. For about half of my time at the hospital, I pretty much slept or was to weak to do anything but lay there.

So great news, I’m all donor cells. So far it’s looking like the de sensation process worked. I engrafted on the earlier side and this caused me to get engraftment syndrome. I spiked a high fever for 3 days. They had to rule out infection and everything is ok there. I also have my skin go like a sun burn. Basically goes all red and hot. This is also what can happen with engraftment syndrome. I am now on prednisone until things settled down. This can turn into graft vrs host disease so it will be watched very carefully.

I get asked a lot how I’m feeling. It’s not an easy question for me because I literally will be totally fine and then be running for a puke bowl. I’m always tired, sometimes extremely. I’m weak, nauseated. But I’m happy to be alive and that the hospital is over.

The next step in all this is on day +100 .I will have a bone marrow biopsy. This will tell us if I am cancer free. Until then I go to Vgh every other day or so and just rest and try to slowly build up my strength. The roads not over so I will keep fighting.

Thank you everyone for your cards and gifts and meals and messages. We appreciate the encouraging community we are a part of and are grateful for each one of you.

Happy thanksgiving ! Everything big and small comes from our Father in heaven. Let us be thankful!!!!!

Sunshine and fresh cool air😎

Hi all

Here is some very good news …Tania is breaking free from the white hospital walls, the beast, the food and going for a walk today !!!!  She is still at VGH but hoping to go home very soon.  She had hope to go home last weekend however she developed engraftment syndrome. This can often happen but in her case it’s happening a little earlier.  It does mean that the cells are working.  They are giving her prednisone to help with the rash.  She is feeling much better today and she does not have a fever.  

You can imagine the roller coaster these last eight months have been and especially this last month … but it is exciting that she can have the sunshine on her face today 😄

I will keep you posted when she heads home… keep praying!!! 

Marie 

Hoping… 

Hi All

The hope was yesterday for Tania to come home… but now she is hoping very soon.  She spiked a fever over the weekend and they need to be sure what it is.  They are running some tests today.  She is on tylenol… so it is a little bit harder to figure out the fever. 

She is eagerly anticipating coming home and hoping to get back into the family life. 

I will keep you posted when she comes home … then this blog will be handed back to her ❤️

Marie